Tuesday, July 3, 2018

Everything seemed so simple when I was a child. Sure, I had Cerebral Palsy and had to have assistance with all of my daily needs, but I also had a family that loved me, supported me and tried their best to give me as normal a life as possible. With them behind me I felt as if I could do anything or become anybody I wanted. When I told them that I wanted to be a doctor or a nurse or an actress when I grew up nobody made fun of my dreams or said that they were impossible. When I told them that one day I wanted to be a wife and mother they would say: “That’s nice, dear, I’m sure that’ll happen one day for you if you really want it to.”

Like any other child I liked playing with other children. My brother and I were very close, so it seemed natural for me to be included in his circle of friends. I went to a school especially for children with disabilities, and there I made friends with girls and boys my own age. My girlfriends and I would play with our dolls. We would pretend that they were real people living within a real family setting and acting out real family situations. In a sense, like other little girls, I think we were preparing ourselves for what we supposed our lives might be like when we grew up. I had boyfriends, too. Like my girlfriends, some of the boys had disabilities and some were able-bodied. Somehow, even at so young an age, there were often romantic feelings between myself and these boys. Even back then I was beginning to be aware of my sexuality. I had my first kiss on the lips from one boy when I was eight, and then got “married” at age ten to another boy who was in my class.

When I reached puberty, however, everything seemed to change. Gone were the days of playing with dolls and the mock marriage ceremonies during recess. The age of innocence had seemingly disappeared overnight. The rules had suddenly, inexplicably, changed. Everyone was becoming concerned about their body image, trying to fit in, trying to find their own place in the world. Like other teenagers, we began to find fault with the way we looked, becoming overly-critical at the sight of the slightest flaw. The people on TV, in movies, and in the music-industry really didn’t help matters either. They seemed to be so beautiful, so perfect, so flawless. Would we ever be like them? It seemed as if society and the media were saying that you had to look perfect in order to succeed in life. It didn’t help that people with disabilities were rarely shown or mentioned in the media either. If this unspoken rule was ever broken, then we were portrayed as helpless and asexual. Usually, the actors didn’t have any type of disability at all and, thus, had no life experiences from which to draw upon.

I felt terribly confused and inadequate during my teenage years, and my mother unwittingly added to these feelings by trying to give me some advice. She told me to try not to become romantically interested in able-bodied boys, her reasoning being that she thought that they would never want the responsibility of taking care of someone with Cerebral Palsy. It was her experience, she explained, that men liked to be taken care of, but they didn’t particularly like to take care of someone else. I should stick to boys with Cerebral Palsy or other type of disabilities who would understand my needs, she told me. My mother wasn't trying to hurt me when she said this, she just wanted to save me from rejection.
Unfortunately, rejected I was - by both able-bodied boys and boys with disabilities! I found that a lot of boys with disabilities only wanted to become involved with able-bodied girls. They didn't want to stick to girls who happened to have disabilities; indeed, they didn’t think they should have to. One boy explained his feelings to me this way: “You live with your disability every day of your life. Why would you want someone who’s exactly like you to remind you of your own limitations?”

There were some boys with disabilities, admittedly, who didn't care whether a girl was able-bodied or not. Unfortunately, I just never "clicked" with them. Either they weren't my type or I wasn't theirs.

I learned that sometimes you can’t help who you’re attracted to, and so, despite my mother's warnings, there were times when I tried to catch the attention of able-bodied men. I was like any other woman; if I saw a good-looking guy I’d want to sit and talk to him, maybe even flirt with him. A lot of these guys liked me, sure, but never in that way. They they just wanted to be friends.

It was unbelievably frustrating for me, and very demoralizing as well. I felt as if I were invisible, as if I were somehow a non-person. I felt as if society expected me to suppress my sexuality and act as if it didn’t matter, and that was just something I would not, could not do. There were some people who assumed I was void of any type of sexuality to begin with and needed to be protected from any kind of sexual intimacy. Outwardly I was the same person I’d always been - cheerful, outgoing, optimistic - but inside I began to feel angry and resentful of these kinds of attitudes, of all the restrictions that were put upon me. I just couldn’t understand what had happened to my life. As a child I was included in all aspects of life; now, I was excluded from a big part of life that most people took for granted. As a child people assured me that my dreams of having a husband and family of my own would be easily attainable when I grew up, but now that I was actually a grown up, it seemed like someone had suddenly changed the rules on me. I was still a nice person, wasn't I? I was a good person with a lot to offer. Perhaps I wasn’t one of those perfect beauties on TV or in movies, but I had my own type of beauty, didn’t I? Why couldn't anybody see this? Why couldn’t anybody get past my disability? And, why was I supposed to stick to my own kind? The whole world should be open to me, just as it is for everybody else.

When I was twenty-three my parents put me into Participation House (a group home for people with physical and mental disabilities) for “parent relief” while they went away on their yearly two-week vacation in the Caribbean. It was there that I began having a relationship with one of the male attendants. He aggressively pursued me by kissing me and telling me that I was both beautiful and desirable.

After I came home from Participation House we started dating for a while. Finally, I thought, I’d found a man who liked me “in that way”, who knew I had the same feelings and desires as any other woman. Finally, I could have a romantic relationship with a man just like any other woman. I was in love with him, or thought I was at the time, but I never fooled myself into believing that he loved me. Even so, when he broke up with me to marry another woman with a disability it hurt like hell. Later on, I realized that what hurt most was the fear that I’d never find anyone else, that this man was probably my last chance at happiness.

Distraught and heartbroken, I took my sister-in-law Sylvia up on her suggestion of going to a male strip club. One visit turned into dozens more. The club was called the Tropicana, and I loved it there! Because Sylvia and I went so often, all of the guys got to know us and we became friends. They even helped me get in and out of the car and, because the club had one step to the entrance, they also assisted me with entering and exiting. One of my favourite memories of that period in my life is of having one guy sit on my lap while another wheeled me to Sylvia’s car.

These young, good-looking men were my muses. I would paint and sketch their images, trying to capture their youth, sensuality, and vitality. I felt as if I were channeling Toulouse Lautrec who also had a disability and painted provocative pictures of women who worked at cabarets, such as the Moulin Rouge.

They were my fantasy. They seemed perfect, flawless, marvelous examples of the male anatomy. The only trouble was that they couldn’t see beyond my disability. To them, I would always be that woman in a wheelchair; pretty and charming, sure, but with a crooked spine and no speech.

At twenty-nine I was resigned that I would die an old maid, a virgin, forever without a mate. If that’s how things were going to be then so be it, I thought; I’d tried my best. And then, one day, something happened that changed my life. A friend of mine talked me into purchasing a computer and a modem. My friend also showed me how to go online access a BBS (bulletin board system) and communicate with people. From then on, I spent up to three or five hours a day in chat rooms with total strangers talking about anything and everything.

One day, I logged onto a BBS called FAN (the Free Access Network) and began chatting with this guy named Rob. He seemed sweet and funny, and I liked him, as he liked me, almost instantly. We chatted for hours and soon found out that we had many things in common. Even so, I didn't feel comfortable enough at first to tell him that I had Cerebral Palsy. I was afraid of how he might react - I couldn't face another rejection! However, because he kept asking me if he could meet me and because he told me he thought he was falling in love with me I felt like I had to break my silence. Amazingly, Rob didn't care about my disability. He still thought I was a wonderful, worthwhile person, he said, and wanted to meet me.

All of my family and friends thought I was nuts to go meet a guy I’d only chatted with for a month over a BBS, but I didn’t care. I knew Rob would be just as he had seemed in the chat rooms of the BBS. I was right, of course, and, when we met that day it was as if we had known each other all of our lives. We started dating after that, and soon fell in love. Neither of us could have been happier; it was as if we had been made especially for each other. For most of our lives, both Rob and I felt like misfits within society. Rob had clinical depression and low self-esteem issues, and I had my physical disability. Apart, we felt misunderstood and devalued. Together, we fit like two pieces of a jigsaw puzzle. We took care of each other.

Rob and I were together for twenty-one years. Through good times and bad, we faced it all with love; respect; and humour. Rob was the sweetest, kindest man you’d ever want to meet. He’d give you the shirt off his back without thinking about it twice. He loved me, needed me, and desired me. To Rob, I was his wife, partner, and lover. He saw past my disability to the real me.

Two days after my thirtieth birthday I came to Rob a virgin. Rob was very happy to show me what went where and why, and I was very eager to learn. I finally knew about the pleasure of sex. Making love with Rob was wonderful because we both wanted to please each other.

(For those of you who know the song Bobbie Brown by Frank Zappa, there’s a line that goes “Thanks to Freddie I’m a sexual spastic!” I would kid around with Rob and say, “Thanks to you I’m a sexual spastic!” We would chuckle over this because the official diagnosis of my condition was Athetoid Spastic Cerebral Palsy.)

Rob only had one sexual partner before me, and without actually knowing it, I stole him away from her. Rob explained that this other woman had only wanted to have sex with him, but she didn’t want the commitment of having a relationship. A lonely guy, Rob was looking for something more meaningful. He was looking for someone who would care about him. So, when we started chatting online and I wanted to know everything about him and I cared about what was happening in his life, he broke up with the other woman.

Like many other couples, after Rob and I got married we wanted to start a family. The first time we tried, I got pregnant. We were so happy and excited! Our friends and Rob’s family felt the same way too. My family, however … not so much.

I won’t get into too much detail. Suffice to say, it wasn’t their finest hour. My brother and his wife had announced their own pregnancy a few months previously, and everyone was overjoyed for them. Of course, I knew that my family was just trying to look out for my welfare, as they always had, and yet, this time I resented it. They had crossed the line by automatically using the word abortion. I was a grown woman, married, and had received positive feedback from my doctor regarding my pregnancy. Why couldn’t my family see that I had become a very independent and savvy person? I didn’t need protection, I needed emotional support.

At five months, Rob and I faced the trauma of having a miscarriage. Although we tried to get pregnant many times afterwards, it just wasn’t in the cards.

Besides the miscarriage, Rob and I faced a lot of hard times. My father and Rob’s mother both passed away, as well as several close friends and our beloved cat Dandylion. Being poor and trying to survive on my meagre disability pension was difficult too.

And yet, we shared good times as well. Birthdays and Christmases were celebrated with family and friends joyously. Rob was always entertaining our friends with music, TV shows, and video games. I was always keeping myself busy with my artwork or writing articles for magazines. We eventually adopted two kittens and named them Hershey and Rascal, whom we absolutely doted upon. And, for my fiftieth birthday, Rob and I went on a ten day vacation in England, which was also like a second honeymoon for us..

Throughout our twenty-one years together, there was more laughter than tears and more good times than bad. We loved each other completely, without any doubt or reservation.

Unfortunately, as we all know, nothing lasts forever …

Rob passed away in 2009 from a massive help with art attack. He was only forty-six years old. It was like losing a limb or part of my soul when Rob died. There’s not one day that goes by that I don’t miss him and wish that he was still here with me.

And yet, life inevitably goes on. I know that Rob would want me to be happy and to have a good life, so that’s what I try to do. I cherish my wonderful memories with Rob, and yet look towards the future as well.

Being able to share my life with Rob has taught me one thing. No matter who you are, if you yearn to find someone special, never give up hope or be afraid to take chances – they might suddenly appear and surprise you!